Monthly Archives: November 2013

I’m sure you can guess what my answer to that question is. My post this month at Autism Women’s Network, Understanding the Gender Gap: Autistic Women and Girls, outlines some key ways in which autistic girls and women often don’t fit the traditional diagnostic models for autism and Asperger’s syndrome. In part, this is because the traditional models were developed primarily by observing autistic boys.

For anyone who reads the article, I have a few questions. If you identify as female, do you think the traits I listed in the article fit you? Do you think including traits like that in the diagnostic model would make it easier for someone like yourself to be diagnosed? If you identify as male (or not female), do you feel like any of the traits also fit you?

I’m asking that last question because it also occurred to me that part of the problem with applying the current diagnostic model to adult women is that it was developed based on autistic children. When I started researching Asperger’s syndrome, I kept coming across information aimed at screening children and had trouble seeing myself in the most commonly mentioned traits. By the time we reach adulthood, we’ve often made a lot of adaptations that conceal our autistic traits. So I suspect that some of the social traits in particular might also apply to many adults, regardless of gender. I’m also curious what other traits you think should be part of the diagnostic criteria or how the diagnostic criteria could be modified to be more inclusive.

And finally, I’m taking next week off to go visit my daughter. Enjoy the rest of November and if you celebrate Thanksgiving, have a great one!

Max. 3 entries per person (1 for a comment here, 1 for a reblog on Tumblr, 1 for a comment/like on the Facebook status)

4 winners will be chosen at random on December 3rd. The first winner chosen will get first pick of the items. The second winner can choose from the remaining items and so on. The fourth winner will receive the fourth remaining item.

I write a lot about the more challenging aspects of being autistic but not today. Today is about the awesomeness that is my autistic brain.

When I read Suzanne Wright’s letter about Autism Speaks’s view of autism, I was shocked and angry. Again and again she used the phrase “This is Autism” in bold letters. Yet the autism she was describing was nothing like the autism I know. I watched the protests unfold across the internet and still those words burned in my mind: This is Autism. Linked to misery and loss, burdens and hopelessness, broken families and broken children.

That’s not my autism and it’s not the autism that I see in the people and families in our community.

What is my autism?

This is my autism: Getting stuck on that phrase and not letting go of it. Getting so stuck that I can’t not think about it. So stuck that I have to act. Perseveration. Obsession. Special interest. I don’t need a national Call to Action. All I need is an idea that I can’t let go of.

This is my autism: Waking up in the middle of the night and creating a flashblog website. Because if my body has decided that we’re done sleeping for the day at 1:45 AM, why not put those extra hours to good use.

This is my autism: Learning to use Blogger, because I’ve always been curious. Reading, researching, problem solving. Forgetting where the new post button is every single time, even though it’s big and orange. Or maybe because it’s big and orange.

This is my autism: Stimming with joy at the first submission, at the enthusiastic signal boosting and the support of our allies, at watching someone type their thoughts into the submission doc, at logging in to find a dozen new submissions, at reading the words of so many people who feel like I do about autism–words that directly counter what Autism Speaks wants the world to think.

This is my autism: Hyperfocusing for hours on scheduling posts. Making a plan. Creating a system. Organizing, organizing. Cutting and pasting, cutting and pasting, cutting and pasting. Making notes and lists. Rewriting the lists. Revising the system. Rewarding myself with a cupcake.

This is my autism: Completely immersing myself in something I love. There are no half measures, no going slow, no wait and see. Once I’m in, I’m all in.

Autism is different for each of us. It’s hard and joyful and confusing and wondrous, just like life. It’s what makes my brain seize onto an idea and race after it, full of excitement, completely engaged.

This flash blog? This is autism.

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a/n: Thank you to all of the people who supported the flash blog by contributing, signal boosting, sharing and cheering it on, especially Beth, Heather, Sharon, Alyssa and Leah for their help in organizing and promoting it these past few days.

Before we get to today’s post, an announcement: As part of the avalanche of advocacy this week, there will be a flashblog on Monday, Nov 18th. You can find the info at “This is Autism” Flashblog. It’s open to autistic individuals, parents and allies and is accepting writing, video, graphic and comics submissions.

On to the post . . .

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Sometimes [often?] I feel invisible.

I thought this feeling would go away when I grew up. Feeling invisible as a kid is normal, right? Everyone is bigger than you. Smarter, more experienced. And the ones who weren’t bigger or smarter or more experienced, were funnier or prettier or . . . something.

I never quite understood what that something was, just that I didn’t have it. When teachers forgot my name, I shrugged and mumbled it for them. Then mumbled it again when they mistook my mumbling for Sandy or Sydney.

And really, to be honest, I never wanted to be one of those kids who everyone knew. The popular kids. Too much pressure. Too much attention. I like blending in. Getting a “well done” sticker next to the “100%!” on my spelling test was about all the positive attention I needed to keep me satisfied.

Still, I assumed being an adult would mean an end to feeling invisible.

*

Invisible is like this: I’m at a neighborhood holiday party. I’m sitting on the couch, talking with someone I know and enjoying it. A stranger sits beside me, inserts herself in our conversation as strangers do at neighborhood parties. She asks typical stranger questions. Do you live in the neighborhood? Where are you from? What do you do? We both turn to her and answer, suspending our conversation in favor of this getting-to-know-you talk.

Do I sound resentful of this intrusion? A little, but more in retrospect, because I know what’s coming.

Slowly, gradually, nearly imperceptibly, I feel the three-way conversation is becoming a two-way conversation between the stranger and the person I was talking to. Eventually, I settle back into the couch so they don’t have to keep leaning forward to talk around me. I listen to their words volley back and forth, unable to find a way back into the conversation, which has now turned to a subject they’re both passionate about.

I wait it out some more, picking at the plate of food on my lap, stuck in a rut of smile and nod as they glide from one subject to another. As much as I want to regain a footing in the conversation, I feel like I’ve disappeared from their radar. Bored and uncomfortable, I finally excuse myself, pointing to my empty plate, saying cheerfully that I want to go check out the dessert table. They look surprised and maybe a little chagrined, as if they only just realized that I’d fallen silent ten minutes ago.

*

It’s easy to assume they had something in common–something I didn’t share–so it was natural for them to become intensely involved in a 2-way conversation. Except that this story repeats itself too often to be “them and not me.”

This is probably fixable. If I was more assertive, made more effort, worked harder at learning conversation skills.

But the invisible feeling comes up at other times too. It’s there when I watch other people take credit for something I’ve done. It’s there when I post something to a group and no one responds. It’s there when someone seems to contact only if they need me to play tech support for their ailing computer. It’s there when someone promises to do something and then forgets, leaving me waiting like an overexcited kid who hasn’t yet realized that there will be no trip to the amusement park today.

The problem, I see, as I’m writing this, is not so much the practical side of learning to be assertive in social situations. As a child, I was clueless about how to make myself seen and heard. As an adult, I have the potential to do something about feeling invisible, but the feeling itself is now the problem.

To write this, I had to force myself to be with it. Invite it to sit here beside me so I can examine it. And I don’t like it. I don’t want to do the hard work that I know is necessary to befriend the feeling and defang it. But I don’t want to let it haunt me anymore either.

Perfectionist is rarely used in a positive context. As a put down, it’s a polite stand-in for rigid, controlling, procrastinating, slow, nitpicky, paralyzed. Even when people try to use it in a positive context, it rarely casts a favorable light. “Your strengths? Well, you’re a perfectionist . . . that can be a good thing.”

The Roots of Perfectionism

And because I’ve been a perfectionist for as long as I can remember, I’ve given a lot of thought to the why’s and how’s of it. Perfectionism is believed to be rooted in childhood. We somehow get the idea in our heads that we’re valued for our achievements. As we grow older, we base our self-worth on the approval of others, convinced that if we can do things perfectly, we’ll be loved and accepted. If we fail, on the other hand, we must be worthless.

This is the classic explanation of perfectionism.

For me, the problem with this explanation is that I never quite felt like it fit. It’s in the right ballpark. I do seek approval from others, though just as often, I couldn’t care less. I put a big emphasis in my life on my accomplishments. Doing well is important to me and I often believe there is a standard of perfection that I should live up to, or at least aim for.

What I don’t see in myself is the worthlessness. I’m hard on myself when I fail, but I bounce back quickly. My fear of failure is low. I’m willing to put myself out there and see what happens, even when I know that the risk of failure is high. It’s rare that I feel worthless, even when I screw up in a big way.

Multidimensional Perfectionism

As I researched perfectionism, I came across more nuanced models. For example, some psychologists believe that there is adaptive perfectionism, which motivates us to strive for success without the negative impact on self-esteem that the classic maladaptive perfectionism carries.

Others classify multiple types of perfectionism based on the object of the perfectionist thinking:

other-oriented perfectionism: setting irrationally high standards for others to conform to

socially prescribed perfectionism: believing that others (particularly significant others) have irrationally high standards for one’s self to conform to

When perfectionism is broken down this way, I see myself in all three categories. The Multidimensional Personality Scale (MPS) backs up my instincts. The average scores are 1s and 2s. My averages are 4s and 5s. In working through the questions on the MPS, I began to formulate a new theory about why so many autistic people are perfectionists.

The Link Between Autism and Perfectionism

I think autistic perfectionism has some additional dimensions to it, beyond the classic model of “if I’m perfect, people will love me.”

First, our tendency toward black and white thinking can create an appearance of perfectionism. If I sit down to write an essay for English class with the idea that I will either produce the perfect essay or I will produce garbage, that looks a lot like perfectionism. But what if I think about my essay that way because I’m not good at thinking in shades of gray? What if it doesn’t occur to me that between perfect and garbage, there exists pretty bad, below average, acceptable, pretty good, very good, excellent and nearly perfect?

It might seem like splitting hairs to differentiate between straight-up black and white thinking and perfectionism, but I think doing so can illuminate an important difference. If I’m trying to write the perfect essay because I truly think the only other option is a terrible essay, what I need to work on is remembering that there are other possibilities. If I’m trying to write the perfect essay because I think that doing anything less makes me a failure as a person, I need to work on my self-esteem.

Personally, I think my perfectionism a mix of the two, weighted more toward black and white thinking, which may be why I don’t have the feelings of worthlessness that commonly go along with perfectionism. If anything, I have the opposite problem. Often I’ll finish something and think it is perfect, until someone tells me otherwise. I’m so certain that I haven’t made a total disaster of it that the only other option is I’ve done a stunningly good job. Bizarrely, my perfectionism cuts both ways, again because I haven’t accounted for things like “really well done” or “good enough” or “close but not quite” in my potential outcomes.

The other factor that feeds perfectionism in autistic people, I think, is rooted in our childhood experiences with failure. As I read through the questions on the MPS, I realized that my strong agreement with statements like “I usually have doubts about the simple everyday things I do” and “People will probably think less of me if I make a mistake” is rooted in decades of living with undiagnosed ASD. Decades of knowing that something was off. Of feeling like I had to work a lot harder than other people to keep up a semblance of normalcy. Of trying to hide all the little ways in which I not only wasn’t perfect, but I wasn’t even “normal.”

Passing, after all, is a kind of perfectionism in itself. It may even be possible to make an argument that our subconscious need for approval is an upshot of the pressure to pass that we feel from childhood.

Autistic perfectionism is like the deluxe bonus edition of perfectionism: subconscious need for approval plus black and white thinking plus social/internal pressure to pass. And like a lot of deluxe bonus editions, this one isn’t really worth paying extra for.

The Scientist and I have done another experiment. A twenty-four hour vow of silence. We began at noon on a Tuesday and finished at noon on Wednesday. The agreement was no spoken communication, but we would text if something urgent arose.

The first couple of hours were odd. I’ve never been intentionally silent simply to see what would happen. I’m comfortable with silence, but I felt like I was having to internalize a new rule, which made me a little tense. Also, there was the factor of the unknown. What would happen? Would we be able to sustain 24 hours of not talking?

After the first few hours, I felt myself start to settle internally. I love the sense of quiet that comes over me when I don’t have to speak or process spoken language for an extended period of time. It allows my internal processes to run uninterrupted. On a practical level, I’m more focused. Emotionally, I feel peaceful.

As the day wore on, I realized a few things:

A lot of what we say in the course of a day isn’t especially necessary. We speak as a touchstone or on impulse or without even thinking.

Without spoken communication, you have to pay a lot closer attention to the person you’re with. I thought it would be the opposite, that we’d feel disconnected. It turns out that not being able to shout from one room to the next about something forces you to be more intentional and aware.

I’m much more naturally inclined to silence than The Scientist is. That’s not surprising.

Being silent created a feeling of being present, focused and energized. I felt more mindful of my actions during the day.

Not being able to communicate complex ideas would get frustrating if I did this for more than a day. We managed to communicate simple things with gestures: time to walk the dog, meet you on the couch in five minutes to watch TV. Beyond that, I had little idea what The Scientist was thinking, which was strange and a bit disorienting.

We managed to make it the full twenty-four hours. Sort of. The Scientist had to take a work-related phone call and he volunteered to go pick up a package at our apartment building’s office. I slipped once and exclaimed “oh” when a man appeared out of the dark beside us as we were walking the dog at night.

All of those felt like reasonable exceptions to the experiment. We never did have to text each other about anything.

I now understand why monasteries that limit or prohibit talking have strict routines. We relied a lot on routine to navigate the day without speech. We always walk the dog after dinner. We always go to the gym on Wednesday morning. If not for those routines, it would have been harder to get on the same page about all the simple activities that fill up our days.

A caveat if you’re thinking about trying this at home: twenty-four hours of silence can drive you deeply inside yourself. The Scientist and I both agreed that we liked this part of the experience a lot. However, two days later I found myself experiencing some intense feelings that had surfaced as a result. If you decide to take your own 24-hour vow of silence, it’s a good idea to be sure you have a support network in place, in the event that you find yourself having a similar experience.

Like our other experiments, this one has taken on a permanent nature. We’ve decided that from now on, Mondays will be silent. I’m looking forward to seeing what the long-term effects of having one nonspeaking day a week will be. And, of course, I’ll be back to share the details.

I have more than one kind of silence. There is the very bad kind, the crushing kind. That one I could do without.

There is also the heavy silence. I can force the words to come out, but each one is an effort, like lobbing boulders out of a pit. They land in the dirt around me, scattered, muffled, obscured by clouds of dust. Lobbing boulders is hard work.

There is the accidental silence. The words fly away, leaving gestures, grunts, nothing at all. “Didn’t you see my eyes get wide?” I ask The Scientist when he wonders why I didn’t warn him about the wall he was about to back into.

There is the silence of too much. Too much input. Too much to process. Too many people, things, noises, questions, answers, objects, movement. I feel myself fading into the scenery, disappearing. I become silence itself. Continue reading Silence II: Variation→

I don’t mean the silence between the words, the comfortable kind, the long drive in the car, relaxed lunch in the park, playing video games for hours side-by-side on the couch, reading together kind of silence.

Frustrating silence is the kind that arises in place of words, filling up all the space where the words should be. It starts with a heaviness in my chest, like my breastbone has become a plate of armor thick enough to stop a lance or a bullet or a barrage of charged emotions.

The weight holds the words down, tethered tight, floating out of reach. I can see them, hear them. Inside me, there is a cacophony of noise as the words rattle and clash, struggling to escape. It feels as if I’m shouting and yet there is no sound, except within me.

Then one breaks free. Two. Five. A phrase or a sentence. Small and inadequate to the task, they float up, fill with breath, are shaped by tongue and lips. Often the ones that escape are the most practiced. Scripts. Platitudes. The reliable “I don’t know.” Continue reading Silence I: Frustration→

Most adults on the spectrum prefer to be called autistic, rather than a person with autism or a person who has autism. The general consensus is that autism is not a separable entity. To be “with” something or to “have” something implies that we might somehow be able to rid ourselves of that thing and still be the same person, much like someone who has been cured of a physical illness.

I have always been autistic and always will be. If I was not autistic, I would be a completely different person. My autistic neurology affects how I experience the world and how the world experiences me. I am autistic. This feels very simple and logical to me.

It is not, however, always as simple for others. I’ve noticed that a lot of people in the autism community (which is different from the Autistic community) find the use of autistic as a label offensive or at least uncomfortable. The primary argument is that “autism doesn’t define” the person that they are reluctant to call autistic (often a family member).

Inherent in that argument is the belief that autism is a negative attribute. Why else would someone be averse to being “defined” by a trait? Would we say, “don’t call Tommy intelligent because his intelligence doesn’t define him” or “don’t call Katie blue-eyed because her eye color doesn’t define her.” Continue reading Autistic as a Reclaimed Word→

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.